Monday, April 23, 2012

max is six!

Max turned six years old today. I am not sure I believe it. I remember the day he was born like it was yesterday, yet the last six years feels like it has lasted twenty. How can this be? I guess we've been through a lot. Max decided to take the day off today. I got the dreaded call from school at 9:45am that he was not feeling well. We spent the day chilling out at home. Well, he chilled and I stressed out wondering what was going on. Appendix? Urinary tract infection? Ear infection? Birthday blues? Since it was raining slush, we played it low key and decided to reschedule the birthday partying for another day. Max is still working on the whole "I'm six" business anyway, so it's all good.

If six has come in like a lamb, then credit that to five going out like a lion. This past month Max fell in the playground and knocked two of his top teeth loose (the Thursday before Easter long weekend no less). Luckily, our family dentist squeezed him in and we were able to get him into a dental surgeon that afternoon. The problem was that Max had eaten that morning, so he couldn't be given any form of anesthesia. The teeth were loose though, so if he monkeyed around with them he could swallow them and choke. They had to come out, so out they came, without any freezing. I am no fan of dentists, so it was zero fun wrapping myself around Max while the surgeon pulled the loose teeth out. I am only now getting used to Max's less toothy grin and I'm 100% certain Max recovered before I did. The only real positive about the situation was that we were blessed with truly wonderful medical professionals who showed incredible humanity in helping Max. The oral surgeon, Dr. Pye, even called the next morning to check and see how Max was doing. Proof there are angels everywhere.

Max, I could not be more proud of you. This past year you have continued your rock star success and inspired more people than I suspect either of us will ever know. You love with your whole heart, and you are loved in return by everyone who is blessed enough to spend time with you. I dare say you have the whole world in your hands. I can't wait to see what this next year brings. Thank you for being my son.

Sunday, April 22, 2012

fundraiser for mateo - autism from a mother's perspective.

Max at his 2nd birthday party (a week before his sister Cameron came into the world and changed his life forever)
This afternoon I had the opportunity to speak at a fundraiser for a little boy named Mateo who was recently diagnosed with autism. As much as I hate "welcoming" new families into the autism community (wouldn't wish it on anyone except our PM, Stephen Harper), it felt important to share Max's story with Matteo's parents and their friends and family. While it has been over three years since Max received his diagnosis, those raw, overwhelming feelings of initial shock and sadness are still easily accessible. I found myself transported back in time, and felt blessed to truly be able to speak from a place of empathy for this family.

Autism from a mother’s perspective.

My son Max, who is turning 6 years old tomorrow, has autism. He was diagnosed at the age of 32 months, but our journey into autism actually started at the age of 14 months when we really started to take notice that Max was not hitting milestones that one would expect. He didn’t respond to his name, or wave goodbye. He didn’t point and most upsetting, he had no words, just a stream of babbling “dadadadada”. Because he was our first child, our doctor told us to relax and brushed our concerns off as those of nervous first time parents.

Max continued to stall and miss milestone after milestone. He had problems sleeping, got terribly upset at the smallest transition. It was only at his 2 and a half year check up, when he sat on the doctor’s examining table and repeatedly banged his head on the wall for the entire appointment, that my concerns were taken seriously. 2 months later we had a diagnosis.
I have documented our journey with Max since the day he was born on my website, The hardest post I have ever written was on the day we finally had our biggest fear confirmed, that Max has autism. I was unable to speak about it, so instead I wrote about it.


And that has been my attitude ever since. We immediately started Max in IBI therapy. He also had Occupational therapy to address his sensory needs, Speech and Music therapy to work towards helping him learn how to speak. Anything that we could do to help him, we did. And it was expensive. The first year of Max’s therapy cost over $50,000. Each year that cost has increased as his therapy has become more focussed and intensive. This year it topped $70,000. We have remortgaged our home, maxed out credit lines and credit cards and relied heavily on the generosity of our families. Funding for autism is in high demand and we waited two and a half years on the ErinOak waitlist before Max was picked up. This funding only covers half of the cost, but it does provide some relief.

I am outlining the costs up front to help you understand what it takes to provide a child with autism the therapy he will need to be truly successful. It is mandatory that this therapy be provided as early as possibly and intensively. My attitude has always been the more therapy the better. Max receives treatment 7 days a week. We don’t take breaks from therapy during holidays - if anything, we snap up extra hours. And it has paid off.

When Max started therapy, he was unable to make eye contact, speak, imitate, follow simple instructions, or play with toys appropriately. He had to wear a helmet on the playground because he would get so upset during transitions in and outside that he would throw himself on the cement ground and bang his head. It took him six months of treatment to “learn how to learn”, and by that I mean, to be able to sit and pay attention long enough to complete a simple activity or task.

Our home was chaos. Sleep was scarce, I had gone back to work full-time after being off on mat leave with our daughter, and it became clear that having both parents working full-time in downtown Toronto was not going to work. There are only so many times you can tell your boss you have to leave work because your son is throwing a tantrum and is inconsolable. Something had to give.

So, I left my full-time job and started working part-time from home. Days are filled with daycare drop-offs, therapy, consultations, meetings about Max, and trying to hold it all together. I realized that if I was truly going to get Max everything he needed to be as successful as he can be, I needed to make that my number one focus. And it has been worth it. Max’s progress continued. I call it the “two steps forward one step back dance of autism”. Little wins, little setbacks, add them all up and you hit huge home runs - like the first time Max said “Momma” on August 20, 2009 after participating in 2 weeks of a Music and Speech therapy camp. We actually celebrate August 20th every year just like it’s a birthday.

Luckily, it is the wins that rise to the top of your memory bank. I keep a bottle of champagne chilled and ready to go at all times. You have to, because the hard days, they are also plentiful and will break you if you don’t celebrate when your child uses a spoon or fork for the first time, hums a song from daycare, looks at you when you say his name, and the ultimate party time, successfully uses the toilet. By the way, we have been working on toileting for 3 years now, and we are still not completely there. I recommend on stocking up on wine when you start toilet training, because that is one of the toughest battles we have fought. But I know that it isn’t a matter of if Max will successfully meet a milestone, it’s only a matter of when. That’s the way you have to approach it. Patience, a sense of humor, and all of the love in your heart. My mentor, the late Kim Pace, told me “Katrina, if you believe in Max, that he can do anything, then that is the truth, that is what will happen”. And I have stood by that advice to this day.

When we fast forward to where Max is today, he is integrated in Senior Kindergarten and attends school in the mornings with a dedicated Educational Assistent. He is the best reader in his class, participates in morning circle, has a favourite girlfriend “Maggie”, requests for his sister Cammie to come play with him at home, is taking gymnastics, and will not only happily tell you what he wants and doesn’t want, but has recently started telling us what he feels with phrases like “Max is sad”, “tummy hurt”, and “I love you”. He is also my grocery shopping buddy and we have a standing weekly lunch date at the local burrito place.

Two things I stand by when it comes to Max are that it is my job as his mom to help him learn how to share his light with the world and that we will all be attending his university graduation.

This deep belief gets me through. That and a tonne of support from my family and friends and the smile of my son. It is the hardest and most rewarding journey of my life. Being Max’s mom has taught me more in the last 6 years than the 30 years combined before I had him. He has changed me profoundly and made me a stronger, more patient and more loving person. I could not have done this alone though. Just as Max counts on me, I count on the support of my friends, family, autism community and Max’s therapists and teachers. My number one advice to parents of children with autism is to make sure you ask for help, people want to help, they just don’t always know what you need. And friends and family, if your offer of help is turned down, ignore that and come over with a bottle of wine and do some dishes or fold some laundry. And buy some raffle tickets! This therapy doesn’t pay for itself!

Wednesday, April 04, 2012

dirty little secrets.

After my last post, a few people expressed concern about the fact that I divulged that I suffer from depression and I am seeking medical treatment for it, in such a public forum. Will future employers google me and find out and not want to hire me? Maybe. Would I want to work for an employer that found my willingness to be open and candid as a sign of weakness? Not on your life. Not talking about depression gives it power. Being ashamed of something that is not my fault is exhausting.

One of my favourite women in the world is research professor BrenĂ© Brown, who I had the pleasure of meeting in Nashville last year. On the hard days, I remember her words "Only when we are brave enough to explore the darkness will we discover the infinite power of our light". I have a lot of light, I just have to let it out. It's hard work, diving into the ugly stuff. But that hard work, it won't last forever. The potential of what's to come makes it worth it.

And I finally did get to meet with the doctor to discuss my medication (thankfully in the outpatient clinic and not in the psych ward). Our first step? Reduce my meds and a referral to a therapist. I'll see him again in a few weeks to see how I'm doing from a medication standpoint. I can't be ashamed of being depressed any longer. I can only be proud that I'm standing up and taking it on in a way that empowers me and others.

Monday, April 02, 2012

sunny day, sweepin’ the clouds away.

Have you ever witnessed something so raw, so base, that you realized that everything you thought about what "the bottom" looked like was not only wrong, but truly ignorant? Friday found me in the mental health ward of my local hospital. Not because I was being checked in (like I have often joked about and made light of), but because I was trying to figure out where the psychiatrist I was supposed to have an appointment with was hiding. Turns out my appointment time had been changed and nobody had told me. As I felt myself start to get irritated with the nurses sitting behind the safety glass, I looked behind me and saw a woman dressed only in a hospital gown.

She said nothing, her eyes were vacant. I smiled at her, not knowing what else to do, and she tilted her head slightly and shifted from one foot to the other. She was a wisp of a thing, and I could taste her sadness. Before long a nurse arrived and handed her two small plastic cups and told her one was shampoo and the other was body wash. The woman accepted the cups in a way that told me this was not the first time her toiletries had been doled out in suicide safe receptacles. She turned and disappeared through a pair of doors, and my heart hurt for her. Without thinking I sent out a prayer to her that she would get better and get her life back.

The reason I was there that day was merely to discuss my medication and a get a second opinion for my doctor. I've been feeling "not myself" (it's been a while, I'm not sure I'd recognize her if I saw her) for a long time. I'm not thinking of doing anything radical like harming myself, but I have days where I struggle to function. If it weren't for my kids, I would probably have become a hermit by now. Most of the time I'm exhausted, I have a lot of trouble focussing, my motivation is out the window and get extremely anxious about things that I can't control. I manage to cover these fun symptoms up when duty calls, but after the fact, I'm so tired from pretending, it takes longer than it should to pull myself together to do it again.

I'm writing this, not for you to think "Wow, Kat's a nut job" or "How unprofessional of her to smear her public persona with this type of information". I am writing this because for far too long, when asked "How are you?", I have answered "Great". And I'll probably continue answering "Great" because that's what people want to hear. But at least in one place, I have started to say what is really on my mind. That I'm not so depressed that I need to be checked into a hospital, but I do need to keep a close eye on it and be truly honest about how hard I struggle.

By the way, when I finally tracked down my doctor, he apologized for the mix-up and I responded "If this is the worst thing that happens to me today, than I'm doing okay". He gave me a funny look, and didn't respond. Go figure. I guess he isn't phased by seeing what I saw. I think I'll stop joking about checking myself into the hospital.